Dying in America


Book Description

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.




The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life


Book Description

This major new work updates and significantly expands The Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying. Like its predecessor, this second edition will shape the ethical and legal framework for decision-making on treatment and end-of-life care in the United States. This groundbreaking work incorporates 25 years of research and innovation in clinical care, law, and policy. It is written for physicians, nurses, and other health care professionals and is structured for easy reference in difficult clinical situations. It supports the work of clinical ethicists, ethics committee members, health lawyers, clinical educators, scholars, and policymakers. It includes extensive practical recommendations. Health care reform places a new set of challenges on decision-making and care near the end of life. The Hastings Center Guidelines are an essential resource.




Dying with Ease


Book Description

Death may be inevitable, but fearing the end-of-life is avoidable. Learn how to put your fear of your final days to rest. We all know we are going to die, but live as though we don’t believe it. Rather than explore our options and consider the possibilities that can impact our final days, we ignore the idea altogether out of fear. By avoiding the topic of death, we increase the pain and grief we experience at the end of life, and the suffering of those left behind. After three decades of caring for the dying, Dr. Jeff Spiess argues that if we honestly face our mortality, we will make wiser decisions, die with less distress, and live the remainder of our lives, whether days or decades, more fully and with less anxiety. Using cultural and religious references alongside poignant narratives, this optimistic work informs, inspires, and challenges our cognitive and emotional understandings of our own lives and deaths. Dying with Ease contains the practical nuts and bolts information about advance care planning, hospice, palliative care, and ethical and legal issues surrounding dying in America. Dr. Spiess answers such questions as: How can I plan for the last part of my life? What options do I have if my suffering is unbearable? What do religion and spiritual philosophy have to say about dying? What does it feel like to die? While dying can be difficult, it can also be beautiful. By learning to relax in the face of death at our current stage of life, we can make wiser and more authentic decisions throughout the rest of our lives-- however long they may be.







Making Tough Decisions about End-of-Life Care in Dementia


Book Description

Practical, essential advice about making tough decisions for people with end-stage dementia. Each year, more than 500,000 people are diagnosed with dementia in the United States. As stunning as that figure is, countless family members and caregivers are also affected by each diagnosis. Families are faced with the need to make vital end-of-life decisions about medical treatment, legal and financial matters, and living situations for those who no longer can; no one is prepared for this process. And many caregivers grapple with sadness, confusion, guilt, anger, and physical and mental exhaustion as dementia enters its final stage. In Making Tough Decisions about End-of-Life Care in Dementia, Dr. Anne Kenny, a skilled palliative care physician, describes how to navigate the difficult journey of late-stage dementia with sensitivity, compassion, and common sense. Combining her personal experience caring for a mother with dementia with her medical expertise in both dementia and end-of-life care, Dr. Kenny helps the reader prepare for a family member's death while managing their own emotional health. Drawing on stories of families that Dr. Kenny has worked with to illustrate common issues, concerns, and situations that occurs in late-stage dementia, this book includes practical advice about • making life-altering decisions while preparing for a loved one's inevitable death • medical care, pain, insomnia, medication, and eating • caring for the caregiver • having conversations about difficult topics with other family members and with health care, legal, and financial professionals Concrete to-do lists and lists of important points provide information at a glance for busy caregivers. Each chapter concludes with a list of additional resources for more information and help. Making Tough Decisions about End-of-Life Care in Dementia is a lifeline, an invaluable guide to assist in the late stage of dementia.




Textbook of Palliative Care


Book Description

This second edition provides the most up-to-date information on all aspects of palliative care including recent developments (including COVID-19), global policies, service provision, symptom management, professional aspects, organization of services, palliative care for specific populations, palliative care emergencies, ethical issues in palliative care, research in palliative care, public health approaches and financial aspects of care. This new Textbook of Palliative Care remains a unique, comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still needs to be explained. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and theirfamilies. However, the science of palliative care is advancing and this new edition will contribute to a better understanding of this specialty. This new edition offers 20 new chapters out of over 120, written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care. This new Textbook will be of value to practitioners in all disciplines and professions where the care of people approaching death is important, specialists as well as non-specialists, in any setting where people with serious advanced illnesses are residing. It is also an important resource for researchers, policy-and decision-makers at national or regional levels. Neither the science nor the art of palliative care will stand still so the Editors and contributors from all over the world aim to keep this Textbook updated so that the reader can find new evidence and approaches to care.




Approaching Death


Book Description

When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening. Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care. This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life: Determining diagnosis and prognosis and communicating these to patient and family. Establishing clinical and personal goals. Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."




Values at the End of Life


Book Description

This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions. America’s health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living. Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient’s suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means. Once defiant of death—or even in denial—many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.




Contemporary Bioethics


Book Description

This book discusses the common principles of morality and ethics derived from divinely endowed intuitive reason through the creation of al-fitr' a (nature) and human intellect (al-‘aql). Biomedical topics are presented and ethical issues related to topics such as genetic testing, assisted reproduction and organ transplantation are discussed. Whereas these natural sources are God’s special gifts to human beings, God’s revelation as given to the prophets is the supernatural source of divine guidance through which human communities have been guided at all times through history. The second part of the book concentrates on the objectives of Islamic religious practice – the maqa' sid – which include: Preservation of Faith, Preservation of Life, Preservation of Mind (intellect and reason), Preservation of Progeny (al-nasl) and Preservation of Property. Lastly, the third part of the book discusses selected topical issues, including abortion, assisted reproduction devices, genetics, organ transplantation, brain death and end-of-life aspects. For each topic, the current medical evidence is followed by a detailed discussion of the ethical issues involved.




Speaking for the Dying


Book Description

Seven in ten Americans over the age of age of sixty who require medical decisions in the final days of their life lack the capacity to make them. For many of us, our biggest, life-and-death decisions—literally—will therefore be made by someone else. They will decide whether we live or die; between long life and quality of life; whether we receive heroic interventions in our final hours; and whether we die in a hospital or at home. They will determine whether our wishes are honored and choose between fidelity to our interests and what is best for themselves or others. Yet despite their critical role, we know remarkably little about how our loved ones decide for us. Speaking for the Dying tells their story, drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital. From bedsides, hallways, and conference rooms, you will hear, in their own words, how physicians really talk to families and how they respond. You will see how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects. And they expose the limited role of advance directives in structuring the process decision makers follow or the outcomes that result. Research has consistently found that choosing life or death for another is one of the most difficult decisions anyone can face, sometimes haunting families for decades. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers could undertake before it is too late.